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Nicole Lee Schroeder, PhD Profile picture
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21 Jun, 6 tweets, 2 min read
Tomorrow I find out if I have small fiber neuropathy, arthritis, if my orthostatic intolerance has gotten worse, if my fusion is continuing to allow proper blood flow to the brain, and if I have any other new diagnoses. 1/6
I also find out if I can finally, after 5 years, secure pain meds once again. If I can benefit from IVIG. And if I need to start taking more intensive MCAS meds. Along with potentially starting new treatments for new dx. 2/6
I consider myself a pretty direct, rational, and well informed patient. I have my questions, my talking points, and I'll be clear about follow up actions with my Dr. I waited a year for this. I need answers and care. 3/6
But it's also overwhelming to be dumped with a mass amount of life-changing information in one appointment. And I do not know why we consider this empathetic or caring. Being told in person does not help. 4/6
I would have much preferred shorter, more frequent calls from my Dr when test results came back (bc bloodwork was done 6 mo ago, and autonomic nervous system testing 2 months ago). Instead I am going to have to sort it all tomorrow. 5/6
If I do have new treatment options, then I haven't been given care for months that could have greatly improved my quality of life. I wonder how much time I've lost, how many years of my life, to the pace of the medical system. 6/6 #MedEd #DisabilityTwitter #MedTwitter

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More from @Nicole_Lee_Sch

Nicole Lee Schroeder, PhD Profile picture
21 Jun
The good news: my symptoms of fatigue, fainting, low BP, GI issues, and brain fog aren't due to blood flow issues to my brain. And my nerves are mostly intact. 1/5
The bad news: this means all the above symptoms are secondary, not primary issues. Aka they're not caused by primary POTS, but they're secondary symptoms bc of #MCAS. 2/5
And there are no approved treatments for #MCAS specifically for the disorder. And the top specialists don't take insurance. And there is a whole lack of research. So I've essentially exhausted all the treatments I can afford. 3/5
Read 5 tweets
Nicole Lee Schroeder, PhD Profile picture
9 May
32% of adults have adverse reactions to fragrance. If you care about making the world more accessible you can start by limiting or ending your use of scented products. That means no scented beauty products, laundry products, air fresheners, bathroom sprays, or scented cleansers.
link.springer.com/article/10.100…
Committing to being fragrance free is a healthy choice for you too! Fragrances are largely unregulated and are known to have carcinogens in them. google.com/amp/s/amp.theg…
Read 9 tweets
Nicole Lee Schroeder, PhD Profile picture
6 May
Once I went to class while not feeling well bc of the attendance policy. We had to give presentations in this course on Lores and Legends. I tried to sit through a talk on the myths behind vampirism and got super sick. 1/4
Because I don't deal well with stories/images/narratives about blood after almost dying post brain surgery. I went into the hall for air, my prof yelled at me for leaving the room, and then I woke up in his arms after having passed out in the hallway. 2/4
After that my accommodations were met regarding flexible attendance. But it could all have been avoided. Promoting trigger warnings, allowing students alt assignments if they miss class, or allowing students to step out of the room during class would have kept me safer. 3/4
Read 4 tweets
Nicole Lee Schroeder, PhD Profile picture
13 Feb
I was diagnosed with #EhlersDanlos and #ArnoldChiari in undergrad. The eds dx came the winter of sophomore year, and the Chiari dx the spring of senior year. I would have given anything to have disabled mentors through those years. 1/11
I care about disability representation in higher ed because I had to find my way into claiming a disabled identity. Alone. Because I didn't know what to read or who to reach out to or what to ask for. Representation leads to belonging. 2/11
In undergrad I had wonderful profs, some of whom privately disclosed medical issues, but none of whom were vocal and public about identifying as disabled. I didn't have a professor with mobility devices like I had. 3/11
Read 11 tweets
Nicole Lee Schroeder, PhD Profile picture
12 Feb
If academia can't offer financial security, medical care, and benefits, it's not a real career track for disabled academics. I can't afford to move every year, change doctors every year, lose medical treatments every year. I'm not applying to any VAPs or adjunct positions. 1/5
I can't afford to keep neglecting my very real medical needs. I already did that for five years. I'm tired of unpaid labor that leads to dead ends. And I'm really tired of the general assumption that if you want to stay in you'll find a way. 2/5
I won't do it. I'll find something equally fulfilling that won't demand that I dig my own grave. And until we acknowledge that "staying in" and "staying competitive" are wildly ableist we won't have an equitable academy. 3/5
Read 6 tweets
Nicole Lee Schroeder, PhD Profile picture
11 Feb
I wonder what it's like to go to the hospital knowing that you'll be listened to, treated as a rational adult, and provided care. Because as a disabled woman I can't trust the system I need to survive. I continue to face eugenics every single day. 1/4
And this pandemic has been a painful and traumatic reminder that there is no real push for change. There is no real push to protect disabled individuals. A year of sheltering had taught me that my regular medical needs will always be placed on the back burner in crisis. 2/4
It's taught me that I'll be blamed for any decline that happens in the span of time when I'm denied care. It's taught me that my quality of life doesn't really matter compared to that of someone who is nondisabled. 3/4
Read 4 tweets

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